The Role Only I Can Play for My Adult Son With Autism

Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.” Just the two of us at a picnic table on a summer day.

By social media standards, life with my son may not win any awards for excitement or variety. We have few adventures to chronicle, no photos of thrill-packed vacations. Our interactions are more modest affairs, and ever more predictable.

My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home. Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us.

I wonder sometimes if I’m actually seeking encouragement, a kind of validation the value of these visits exceeds my own longing for something more. Because I feel more like a spectator than the woman once at the center of his world.

In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.

I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care. I’d be free from those demands, free to explore a more satisfying connection with him as he enters adulthood.

As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us. More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.

Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.

The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home. I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months. Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud: Picnic with Daniel on a beautiful day. It’s not enough. But it’s what I have.

We met at a local park and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before. I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch. His “obsessions” have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined. There is so little I can give him now. I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.

Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits. It’s been months since I’ve been alone with my son. The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own; they seem to be triggered, in fact, by my presence. Old patterns are difficult to break. Memories of losing control of my son remain, vivid, haunting and formidable.

Yet time with him has come to feel like supervised visitation, the structure in place to help him dictating the terms of our relationship. I miss time alone with him, privacy as I mother him the only way I can: tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.

I’m ashamed to admit I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be only mine. The very competency of the staff rakes the embers of my doubt, which has smoldered for years, the guilt that my own care for him was ultimately not enough. I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.

I don’t know how to reconcile this sense of loss derived from what should be celebrated, the development of my child as he learns a new life apart from me. The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.

There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons. A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.

It’s a rhythm scored over years speaking a language without words, weathering together the meltdowns and setbacks, savoring the small triumphs of our uncommon life together. While resting side by side against his headboard, books or flashcards across our knees, as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name: “Zebra!” “Cow!” “Wolf!” It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light. “Good night, sweet Daniel. I love you, Daniel, my sweet, beautiful boy.”

It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides? Perhaps he is more content than I can possibly understand, taking all he needs from me and our visits, the routine we’ve established, the mild experiences of my Facebook posts.

The procedural support is in place to help him towards a positive, independent direction. But he needs the emotional nourishment of his mother, too, of all of us who have loved him without question for a lifetime, whose love transcends all circumstance. I can’t rest until I find that place again.

I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son or our relationship to one another. No line will be drawn beneath Daniel’s life or my experience with him. I have a role that only I can play, even as I stumble and gasp and bungle my lines. Letting go of my dreams for him has never been an option. Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.

That hope is painful sometimes. But it’s what I have.

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Kristen Scott has two adult children, including a 24-year-old son with autism. Her essays have appeared in the Chicago Tribune, Chicago Parent, the suburban Chicago papers of the Pioneer Press and two book anthologies. She led a support group focusing on the emotional needs of parents with special needs children for seven years. A speaker on autism to various groups, she blogs at Good Marching: Experiences in Autism and the Rest of Life. She and her husband, Andy, live in Deerfield, Illinois.